My 2 adult children have confirmed my growing fears.....they hate that I've had to cancel things and what I've become and have had it with me and don't want to be bothered with me anymore. They don't believe that I have anything wrong with me even though I have tried to explain it and said over and over to them that this is not in my control. I think they are hurt and it's turned into something ugly.
They think I'm the worst Grandmother ever because I can't watch the kids very often. I'm constantly being compared to their Mother in laws. They think it's all in my head, which of course it is, lol, just not how they mean it.
It was bad enough when friends began to slip away because of this disease and I had no choice but to stay home and try to remain as calm as possible to get through the pain. But I've always thought that my kids would be different.
I was just wondering if anyone else is going through something similar?
People don't always know how to deal with another persons pain...they feel helpless. But I do remember when this thing first struck my husband and noticeably it was having an effect upon me and my 11 year old son simply because it changed his personality and we had to adjust to it. But never did I lose sight of knowing how horrible it was for him and always told my son...no matter what, he loves us and we love him. That's the way it is...for better or worse. The TN has now returned full swing after years of being almost pain free and my son is well into adulthood. Did it have an effect on him, yes, but other things did too - so try not to be hard on yourself - because the facts are, nobody could do any better and if they could, they would. I'm sorry you are feeling abandoned by your family members. It can be such a lonely thing when people walk away from us... You are in my thoughts tonight.
Thank you Fluffy for the encouragement, it does help.
I know that it's not been easy on them. Things didn't turn out like we thought they would. I hope they will come around soon.
Cheryl
Fluffy said:
People don't always know how to deal with another persons pain...they feel helpless. But I do remember when this thing first struck my husband and noticeably it was having an effect upon me and my 11 year old son simply because it changed his personality and we had to adjust to it. But never did I lose sight of knowing how horrible it was for him and always told my son...no matter what, he loves us and we love him. That's the way it is...for better or worse. The TN has now returned full swing after years of being almost pain free and my son is well into adulthood. Did it have an effect on him, yes, but other things did too - so try not to be hard on yourself - because the facts are, nobody could do any better and if they could, they would. I'm sorry you are feeling abandoned by your family members. It can be such a lonely thing when people walk away from us... You are in my thoughts tonight.
Dear Cheryl, I am so sorry, but I do know, after 20+ yrs. my family is so sick of tn.They say hurtful things all the time and avoid me like the plague.I bet they are sick of dealing with my almost constant tn1 and tn2 pain,but guess what, I bet you I am sicker of tn then anyone of them I wish they would just think for one sec. just how sick of it we must be! Soft. Hugs to you, dawn
Thanks for the support Dawn Monarch......It's so true. I feel as if they have turned their hurt and frustration into anger against me and it feels like salt being poured into the wound. Sorry to hear that it has happened to you as well.
Like many on this site I have been left feeling confused by the constant pain, it really does suck a lot out of a person.
Take care,
Cheryl
Dawn Monarch said:
Dear Cheryl, I am so sorry, but I do know, after 20+ yrs. my family is so sick of tn.They say hurtful things all the time and avoid me like the plague.I bet they are sick of dealing with my almost constant tn1 and tn2 pain,but guess what, I bet you I am sicker of tn then anyone of them I wish they would just think for one sec. just how sick of it we must be! Soft. Hugs to you, dawn
Thanks virginia girl....How true it is. I had to stop going onto face book where I would see all the pic's of everyone else having a fun and a fulfilled life and me sitting here crying alone. The worst was that none of them seemed to care. The one big thing that this disease has shown to me is the lack of compassion in this world. I'm sorry to hear that you are up against this stress in your own home. I used to have an open door policy with my kids but that had to fade out when this TN started 5 years ago. The onslaught of noise was too piercing to my pain. Even the dog barking because he wants to play can cause pain.
I wish the onlookers especially family members would use their brains. To what end would anyone make up this pain just in order to be excluded and looked down upon??
There must be a silver lining in this from God. I know that they are acting out of ignorance and I forgive them but I'm also praying that God will show them the truth and to soften their hearts. I am very thankful once again for this support site.
Take care,
Cheryl
virginia girl said:
Hey Cheryl. I'm so sorry your children are doing this to you. I know people do not get what we are going through and many don't try. Even if they do not think it is all in our heads they do not understand why we can't plan anything. My husband tells me 2 minutes before someone is coming and I feel so terrible when I have to hide in my room with earplugs in praying the sound will stop and the pain will ease up. I resent him and my daughter when they plan outings at the lake or trips kayaking because I know I will never be able to go. It's worse for us because we are the ones missing all the fun! I wish they could understand how it feels, how it hurts (physically and mentally) but they don't. I do try to hold onto God's promise that "all things work together for good for those who love Him." I know you are doing good by being on this site and helping others. God will hear you and comfort you I am sure. My prayers are with you.
Cheryl, not sure if this will help or not, but I will share. I have had TN for 10 years, learned to live with those that could not handle it and left, my family is not close, kinda of a fake relationship if that makes sense. Then 4 years ago my hubby became very ill due to a medical mistake, he was in the hospital 2 1/2 years, went from a hard working man to disabled, lost a leg, kidney failure in a wheelchair, talk about people running, that includes family and friends. I don't have human kids, but have experienced family his and mine, friends, say they can't handle it, really, what are you handeling? Have learned to value and appreciate this site and those that have hung in there with us, very few, and most of all God as y'all have said. Our furbabies sure help, they care not what we have, they love, love us! Sometimes frustration, pain and anger can make you almost crazy with sadness, when we need those we love the most they run, they don't get it, I think it is easier not to get it than to try and understand, that is not my make-up, but seems to be more the norm. A quote I say to myself is what ever someone thinks of you is none of your business, brings comfort and true. You know your pain, I wish they got it, but you can only do what is best for you day in and out. Anyone in here knows we are all tough as nails to live with this and we do, we live on. There is life with TN, it changes, but there is life. You are loved here and I am sure by many, hurt is so hard to deal with, I have learned that, but have to keep on and one day we all answer to who matters! Take care of you, sending gentle hugs,
Hey Cheryl. I'm so sorry your children are doing this to you. I know people do not get what we are going through and many don't try. Even if they do not think it is all in our heads they do not understand why we can't plan anything. My husband tells me 2 minutes before someone is coming and I feel so terrible when I have to hide in my room with earplugs in praying the sound will stop and the pain will ease up. I resent him and my daughter when they plan outings at the lake or trips kayaking because I know I will never be able to go. It's worse for us because we are the ones missing all the fun! I wish they could understand how it feels, how it hurts (physically and mentally) but they don't. I do try to hold onto God's promise that "all things work together for good for those who love Him." I know you are doing good by being on this site and helping others. God will hear you and comfort you I am sure. My prayers are with you.
Thank you so much Betsy. All this support on this matter from this site is so beautiful. I am so thankful to God for this!
I like what you said about "what are they handling?" What a world we live in, lol.
All the best to you and your husband and your furbabies.....I have a beautiful dog and cat that keep me company and love me too.
Take care,
Cheryl
Betsy Carlson said:
Cheryl, not sure if this will help or not, but I will share. I have had TN for 10 years, learned to live with those that could not handle it and left, my family is not close, kinda of a fake relationship if that makes sense. Then 4 years ago my hubby became very ill due to a medical mistake, he was in the hospital 2 1/2 years, went from a hard working man to disabled, lost a leg, kidney failure in a wheelchair, talk about people running, that includes family and friends. I don't have human kids, but have experienced family his and mine, friends, say they can't handle it, really, what are you handeling? Have learned to value and appreciate this site and those that have hung in there with us, very few, and most of all God as y'all have said. Our furbabies sure help, they care not what we have, they love, love us! Sometimes frustration, pain and anger can make you almost crazy with sadness, when we need those we love the most they run, they don't get it, I think it is easier not to get it than to try and understand, that is not my make-up, but seems to be more the norm. A quote I say to myself is what ever someone thinks of you is none of your business, brings comfort and true. You know your pain, I wish they got it, but you can only do what is best for you day in and out. Anyone in here knows we are all tough as nails to live with this and we do, we live on. There is life with TN, it changes, but there is life. You are loved here and I am sure by many, hurt is so hard to deal with, I have learned that, but have to keep on and one day we all answer to who matters! Take care of you, sending gentle hugs,
Cheryl. I pray we all find peace and quiet within our pain filled heads and some day there will a miracle for us who suffer. We are not visible as we do not have white canes, wheelchairs, etc and that is why people cannot see we may be in pain. My hubby has been upset on occasions before we knew it was TN that we had to cancel outings with friends or family and sometimes now he gets frustrated and upset because he cannot help me or do anything to alleviate my pain. I love my dog but I do yell at him because he loves to bark. He may be small but thinks big. I went out to dinner with some friends tonight for the first time in a long time. It was difficult because I wanted to talk as it was a fun night out but I had to order soft foods and it was difficult chewing. I enjoyed being out but good ole TN definitely let me know I was fighting an uphill battle and TN was the winner tonight. I wish there was a better solution for us. Hopefully your family and friends will come to understand. I talk about this site and tell people about it. If they care they might look at the intro page to see what TN is about. It might help
Take care and as I always say please find something each day that makes you smile and thankful.
Chippy. Ps sorry I got rambling there
Thanks Chippy for the support. I have suggested the info online but as far as I know they haven't looked into it. I'm going to a stop smoking group for 6 weeks and we had the 4th session tonight and it was great, the group of us are a good fit and there's so much laughter. It felt so good but as usual I now have pain but it was worth it. Going out to dinner is a hard one now, I eat like a bird the few times I do go out. The sharp sound of a dog barking is hard for me too.
That's part of the problem when we don't look like we have anything wrong with us, no one believes us.
Take care,
Cheryl
Chippy said:
Cheryl. I pray we all find peace and quiet within our pain filled heads and some day there will a miracle for us who suffer. We are not visible as we do not have white canes, wheelchairs, etc and that is why people cannot see we may be in pain. My hubby has been upset on occasions before we knew it was TN that we had to cancel outings with friends or family and sometimes now he gets frustrated and upset because he cannot help me or do anything to alleviate my pain. I love my dog but I do yell at him because he loves to bark. He may be small but thinks big. I went out to dinner with some friends tonight for the first time in a long time. It was difficult because I wanted to talk as it was a fun night out but I had to order soft foods and it was difficult chewing. I enjoyed being out but good ole TN definitely let me know I was fighting an uphill battle and TN was the winner tonight. I wish there was a better solution for us. Hopefully your family and friends will come to understand. I talk about this site and tell people about it. If they care they might look at the intro page to see what TN is about. It might help Take care and as I always say please find something each day that makes you smile and thankful. Chippy. Ps sorry I got rambling there
Hi Cheryl I am sorry that your family has done this to you What procedures have you tried I do not know you may want to check into getting and MVD if you are healthy or a gamma knife if you are unable to get MVD Some times it is hard for kids to see their mother as the sick one Moms in their eyes are supposed to healthy and solve all the problems Have your kids ever gone to the doctor with you. You should ask them to go with you sometime and have the doctor explain it to them. I know how you feel my kids I do not think quite understand how much pain I am in either I am lucky my husband does my friends have been pretty good I do not have very many close friends do the ones I do have are pretty understanding. it is hard when we have a disease that is invisable. God Bless you and take comfort that you are not alone many other unfortuantly share your same problem.
Cheryl and everyone else-
So sorry to hear that people can be so unkind and caring to other people.
If they had this terrible disease they would want caring and compassion.
I just went through this with a “friend” a few days ago and I am stunned by her behavior.
I hope you all feel better and have a low pain day.
Moxie
Thanks for the support Moxie, I'm really sorry to hear a friend has put you through this too!
Where is the compassion in this world?? The elderly get thrown aside and the disabled and people like us with Chronic pain.
It seems to me that many are in a "me" moment in time, if we can't offer what they want then I suppose we are just not good enough for them. I think Psychology and society is really brainwashing people to put themselves first and to get rid of those who "bring them down" and teaching people that it is their "right" to avoid anything that might stress them out. My daughter has been in counselling due to an exhusband who was abusive and she's being told this crap constantly. I understand about the abuse but it goes way to far. My daughter actually did send me a message via facebook and then we talked last night but not about our problems, actually more about her work issues, but still I'll take it. My son's fiancee invited me to a BBQ in late Aug. and I accepted the invite and I have left a few messages for my son but he's not calling back. So now I don't know if it's just her inviting me and he may not know about it or what's going on. But I'll go and hope for the best. Or should I say I'm praying that I'll be able to go, lol.
It's true what they say about friendship........this is one way to find out how true the friendship is or who the person really is.
Thank you Katthompson4, I'm happy to hear that your husband is very understanding. At least there's that. As far as I know my TN does not qualify for an MVD or gamma knife. I also have a bad back and neck. I had xrays/mri done in 2008 and it was Osteoarthritis in both and compression of a few vertibrae, so It's not operable either. Basically it's pinching on the nerves and causing neoropathic pain. I just had new xrays done and going to Physio on Monday. I also have tmj from a tooth pulled 23 years ago. I knew 2 ladies years ago who had their tmj operated on. One was totally healed and the other was disfigured and her one side of her face was droopy and she had to hold it in place when she chewed her food. That put me right off of the idea. So all of my pain is basically nerve pain.
My daughter and I did talk last night but it was just regular chit chat but at least we are talking again. I made it known about seeing her and the kids more and she agreed so we'll see. My son still isn't returning my phone calls. There's a few places in the city where I live that I might join up with. People my own age who may have physical problems, just to enjoy some socializing.
Take care and God bless,
Cheryl
KATTHOMPSON4 said:
Hi Cheryl I am sorry that your family has done this to you What procedures have you tried I do not know you may want to check into getting and MVD if you are healthy or a gamma knife if you are unable to get MVD Some times it is hard for kids to see their mother as the sick one Moms in their eyes are supposed to healthy and solve all the problems Have your kids ever gone to the doctor with you. You should ask them to go with you sometime and have the doctor explain it to them. I know how you feel my kids I do not think quite understand how much pain I am in either I am lucky my husband does my friends have been pretty good I do not have very many close friends do the ones I do have are pretty understanding. it is hard when we have a disease that is invisable. God Bless you and take comfort that you are not alone many other unfortuantly share your same problem.
Betsy, That's just so sad. And selfish! To think family and friends decide a person is no longer worth it because they've become disabled...what do people think just because a person has a condition that they STOP having feelings or a need for connection?
Betsy Carlson said:
Cheryl, not sure if this will help or not, but I will share. I have had TN for 10 years, learned to live with those that could not handle it and left, my family is not close, kinda of a fake relationship if that makes sense. Then 4 years ago my hubby became very ill due to a medical mistake, he was in the hospital 2 1/2 years, went from a hard working man to disabled, lost a leg, kidney failure in a wheelchair, talk about people running, that includes family and friends. I don't have human kids, but have experienced family his and mine, friends, say they can't handle it, really, what are you handeling? Have learned to value and appreciate this site and those that have hung in there with us, very few, and most of all God as y'all have said. Our furbabies sure help, they care not what we have, they love, love us! Sometimes frustration, pain and anger can make you almost crazy with sadness, when we need those we love the most they run, they don't get it, I think it is easier not to get it than to try and understand, that is not my make-up, but seems to be more the norm. A quote I say to myself is what ever someone thinks of you is none of your business, brings comfort and true. You know your pain, I wish they got it, but you can only do what is best for you day in and out. Anyone in here knows we are all tough as nails to live with this and we do, we live on. There is life with TN, it changes, but there is life. You are loved here and I am sure by many, hurt is so hard to deal with, I have learned that, but have to keep on and one day we all answer to who matters! Take care of you, sending gentle hugs,
Hellol Cheryl. My heart is breaking for you. I have a 9 year old daughter and almost 3 year old twins. I feel they will never know me as myself but just a sick mom. My advice would be to print everything you can about tn. Send links to some of the attacks that are recorded on YouTube to them and wait. After the information if they feel the same way then it is out of your hands. May you have some peace.
Thanks Amynay, you have your hands full especially with TN, how do you do it????
Take care,
Cheryl
Amynay said:
Hellol Cheryl. My heart is breaking for you. I have a 9 year old daughter and almost 3 year old twins. I feel they will never know me as myself but just a sick mom. My advice would be to print everything you can about tn. Send links to some of the attacks that are recorded on YouTube to them and wait. After the information if they feel the same way then it is out of your hands. May you have some peace.